Bronchoscopie

It's that time again, time to check and make sure everything is going well in Maddy's new lungs. She has been doing very well these last few months. Her lungs are getting stronger every day. She was able to go to Universal Studios for Rock the Universe with ma last weekend and she had a blast. Last year she tried to go but could not get wrong the park because she couldn't breathe. This year she practically ran around both parks and road every coaster in sight!

Today we got to TGH at 6am for her next bronchoscopie, it's 8 now and we are all checked in and waiting. They will be looking for signs of rejection and doing little biopsy checks to make sure all the tissue is still healthy. If everything looks good they said they can finally cut back on her prednisone. Which will be a big relief because it puts her on edge and makes her mad at everyone all the time.

Not much else going on, Maddy's tummy is still giving her problems so her weight is not going up as fast as she would like. But it is going up, she is up about 4 pounds since her last visit three weeks ago. Hopefully they will be able to get things dialed in a little better for her soon.

I'll try to update this post next week when we get the results of today's biopsies.

Day Five

The picture above pretty much sums up Saturday and Sunday. Maddy fought the shoulder pain all weekend long. They continued to use narcotics to keep her pain to a minimum on Sunday. They started her on Ultram every six hours and left her the pump with hydromorophean that she could use every 20 minutes if she needed more relief. She spent a lot of yesterday trying to stay out of bed so she didn't loose any of the new lung function she has been fighting so hard to get. They did a chest x-ray and said everything looked great. The PFT's she does on the little hand held spiriometry machine are still up pretty high. They are only a little lower than when she was at home but that is probably because the pain keeps her from giving as much effort. Overall I think her new lungs have been great through this whole process.

Last night just before bed they took her off the pain pump and just kept the Ultram and Norco by mouth on a regular schedule. That was able to manage the pain without any issues for Maddy. The only problem she had after that is the narcotics have stopped her bowels from moving. And of course they want to make sure everything is moving in the right direction. They already have her on a regiment of Senokot, Colace, and Miralax to keep her moving but she needed a little extra boost. Instead of giving it to her yesterday, while she was up anyway, they gave it to her at 9:00 last night! Remember that little rant the other day about trying to sleep in the hospital. Yeah, that was easy compared to last night. The poor girl was up every other hour having to go to the bathroom. They were staggering the Ultram and Norco to keep the pain at bay so the nurse was in the room every other hour to give her a pill as well. You think those two things would sync up? Nope. We were up every hour to hour and a half last night!

The good news is that will be our last night in the hospital! Maddy's pain is under control and getting easier to manage every day. Her bowels have moved and she is able to drink and "eat" without any issues. The surgeon who did the transplant came by this morning and said he would like to get a CT scan of the area where he repaired the vein before she goes home. So we are stuck here until that happens. Everything else is just about ready to go. Dr. Haddad has already written her discharge orders, we are waiting for the Dr. Goldin's group to come by and write theirs, then a quick chest CT and we are heading home! Hopefully all this happens before noon today.

Thanks again for all the prayers. After this all Maddy has to do is show up for clinic every week and try to keep from catching any bugs! And of course get stronger and healthier every day. One day at a time.

Tough Day

The day after surgery is always a tough one. The doctors were in and out all night long last night. Literally, we went to "bed" a little after 11pm and at 1:30am a surgeon came by to check on Maddy. Lights on, checking incision sites, asking about pain and the like. Then another one showed up at 4am, same deal. And then of course the normal morning routine kicked in at 5am. Here is how that plays out...

5am - nurse comes in to draw morning blood work, try to go back to sleep
5:30am - nurse comes back in with prograf, take under tongue then try to go back to sleep.
6am - patient care tech (PCT) comes in to check vitals, blood pressure, temp, O2 sats, try to get back to sleep.
6:15-6:30 - PCT changes trash and restocks med supplies in room for shift change. Try to sleep through that.
7 am - PCT checks blood sugar, Try to get back to sleep.
7:30 - day nurse comes in for shift change "assessment", which usually includes asking how your pain level is just before poking at the incision sites. Pretend to go back to sleep.
8am - nurse comes back with morning meds, swallow 8 horse pills and ask for more pain meds, TRY TO FALL BACK TO SLEEP!
9am - doctor comes in and wakes her up, asks what's wrong, she says 'nothing, I'm feeling ok' in the hopes of getting out of this crazy house of sleep deprivation. Doctor says, ' then why are you still in bed? You must be sick. Better watch you for a few more days.'

And people think hospitals are for getting rest and recovery. Nope!

Sorry about the little rant. Sometimes I just need to get that out of my system. Back to Maddy's progress.

She was given a pain pump of dilaudid with a button to control the pain last night and that helped with a lot of Maddy's pain issued for the night. This morning she was having a lot of pain in her left shoulder. We thought it was muscle pain from being put in a weird position during her surgery. We were informed by the surgeon later that the pain is from the CO2 they pump into her abdomen for the procedure. They try to remove as much if it as possible but the rest just has to dissipate on it's own. Apparently while it's dissipating it can migrate up into the left shoulder area and cause severe nerve pain. It could take a few days to completely dissipate and the doc said one of the best ways to get it out of your system is to get up and walk. Unfortunately the pain is so bad it's making it impossible for Maddy to be upright very long.

She was hoping to get out of here the day after the surgery but it looks like she will need stronger pain meds to get rid of this nerve pain than she anticipated. That will end up keeping her here longer. It's all in kind of a wait and see scenario at the moment. Maddy has been trying to get off the IV pain meds but that has not worked today. She will allow them to keep the pain meds coming on a regular schedule to stay ahead of the crest today and try to get off the IV meds again tomorrow. The doc said that as long as she is not vomiting and can manage the pain with oral meds he will let her go. We will see what tomorrow holds.

Peace!

Surgery Over

Dr. Goldin came out of the OR at about 12:40 and said everything went well. No need for a larger incision and the procedure went perfectly. I was called back to the recovery room about 40 minutes later. Maddy was wide awake and in pain but she looked good. They got her some more pain meds and she started feeling better quickly. After that she was sitting up in bed drinking ice water in no time flat. The girl is driven! She wants to be out of here as quick as she can. The doctor had mentioned that after the surgery a lot of patients, especially CF patients, find that they can't burp. This causes bloating that can be pretty uncomfortable. To our surprise Maddy was burping right away. Looks like that may not be much of an issue for her. I am hoping it's a sign that she will recover quickly.

We got back up to her room on the 8th floor by about 2:45 and Maddy is resting now. I'm going to go downstairs and eat for the first time today. Hopefully she will get a little rest this afternoon and tonight and be ready to go home tomorrow.

Surgery Information

Maddy went back for the Nissen procedure at about 10:15 this morning. We are praying everything goes well. There are a few issues that can come up because of her previous abdominal surgeries that could complicate things. The procedure is laproscopic so usually they go in through the belly button and then two little punctures on the sides of her abdomen. Because she had the feeding tube before her stomach is attached to her abdominal wall. They have to disconnect that piece of tissue to do the Nissen. Dr. Goldin said he will try his best to do it laproscoprically but there is the possibility they will have to actually open her up. I really hope they don't have to do that because that will double her recovery time. And she really does not want to hang out in the hospital any more.

So now I wait again. This surgery center is much larger than the thoracic surgical waiting room. Lots of people, no offense but I don't want to be around all these people. Especially the people with the hacking TB sounding cough. I am hiding in the farthest corner from humanity I can find. Maybe I will try to watch Netflix on the iPad while I wait. That should get my mind off all of this.

I'll post again after surgery.

Testing the new blog

We are sitting in the doctors office waiting for Maddy's bed to be ready. We got here at 9AM for her regular clinic visit. They accessed Maddy's port without any problems and were able to get her blood work drawn from that. Which made Maddy very happy! She met with the transplant team and did her breathing treatments and PFT's already. She is up to 45% lung function, up three points from last week! They say those numbers will continue to improve over time. Maddy has no problems breathing at all. She even walked five miles they other day while visiting friends and didn't have to stop and catch her breath.

The doctor said the surgery should be quick and easy. That is exactly what we will be praying for! We are going to run downstairs and grab lunch while we wait for a room. I'll post more later.

Oh yeah, I'm testing a new blogger app for my iPad and I hope it works.

Update:
We finally got into a room at around 5:00 and boy are we frustrated! I guess it's better than coming in tomorrow at 5AM, waiting three hours or so to go back for surgery and then having to spend most of the day after her surgery in a recovery room while we wait for a bed. This way she has a room to come back to right after surgery tomorrow. Hopefully it will go well and she will be up and moving quickly afterward. The doctor said as long as she is not vomiting, can walk around and can poop she can go home right away. Non transplant patients who get this surgery usually go home the same day.

That's all for tonight. I'll update again after the surgery!

On the Mend

It's been a few days since Maddy got out of the hospital and things are going well. Monday was very busy getting all her instructions and meds for discharge. We finally got out of the hospital at around 4:00 in the afternoon. Just in time to get stuck in all the traffic of the clerical employees from the hospital leaving. But we were out! Monday night and Tuesday we spent most of our time getting everything situated for Maddy at the house. We also took Maddy for a hair cut, she was so excited! She is feeling really good. A little pain from being more mobile than she was in the hospital but they gave her some good meds to manage that. She is eating well and looking forward to gaining her weight back.

Today we had a early morning clinic visit. Originally she was just supposed to come in for a blood draw to check all her med levels but that changed after we left the hospital on Monday. There is a virus called CMV that just about everyone in the world has. When you suppress the immune system it can come out of dormancy. This sounds familiar! They already have Maddy on an oral med to counteract it but today they wanted to give her an IV infusion of something stronger to stomp on it. So the quick check in for blood work turned into a full on clinic visit. Everybody loves Maddy's new blue hair though!

We also have the schedule for her Nissen surgery. She will come back for a clinic visit next Thursday the 28th and they will admit her for the surgery to take place on Friday. After surgery they said she gets to go home as soon as her bowls move. So hopefully that means she will be out again on Saturday or Sunday. Then it's a liquid diet for about two weeks and usually on to soft foods for another week then back to a regular diet. It's a good thing we have lots of Scandi shakes and protein powder at home!

That's about it for now. She has a week to be as normal as possible then it's back to the grind. Her spirits are high and she is enjoying her new lungs!

This just in...

Maddy came to work with me after the doctor appointment and everyone was very excited to see her. So excited they wanted to put her on the radio! lol. She recorded an interview with Jamie that he will play today in two parts, once at 3:35 & 3:50 then again at 5:35 and 5:50. I will post the audio from the interview here soon. Listen online at www.spiritfm905.com

Peace!

On the way OUT!

The picture above is actually from the other day when Dr. Haddad took Maddy’s stitches out from the chest tube sites.

The scoop today is that MADDY IS GOING HOME!

They actually began this process on Thursday of last week but we did not want to say anything in case it didn’t happen. Last week the word was that they were going to have a meeting of the minds on Monday morning and make a final decision as to whether or not they were going to do the Nissen surgery early this week and let her go home Friday or get her out earlier. Yesterday Dr. Haddad told Maddy that she would be going home on Monday but we didn’t want to believe him until we actually saw the ball in motion. This morning at 8:10 Ginger the Transplant coordinator came in and confirmed that after 40 days in the hospital Maddy will be going home today.

We still have to meet with the pharmacist to go over all the medications she will be taking at home. He will give us a 30 day supply before we leave. We also have to be seen by Dr. Rolf, which usually happens by 9 or so on weekdays. Lots of work yet to get done before we are cleared to get out of this place but we see the ball rolling!

It will probably be mid to late afternoon before all this stuff is done so we are trying to take it easy and not get too worked up. But we are ready to walk out the door RIGHT NOW! The next leg of the journey is about to begin. Maddy still has a long road of recovery to go through. Now she gets to recover at home.

More to come...

The Long Hall (pun intended)

There has not been a lot of amazing things going on to talk about on the blog. And we have not wanted to jinx any of Maddy's progress so I have been staying away from blogging. However we are beginning to see a little light at the end of the tunnel. Maddy had her bronchoscopie today and everything looked great. We are just waiting to see if they are going to do the Nissen surgery before she goes home and then we should be ready to go. Things have been a little confusing regarding her need for that surgery so it has been a little frustrating to say the least. We are hoping to have a final answer on Monday.

They are still treating her for the viral meningitis. She has four more days of IV antiviral meds left on that course of treatment so that lines up with a possible release date early next week as well. The headache has been gone for the most part since late Tuesday. It still flares up a little but I think the Gabapenten has finally done it's job. Other than that Maddy has been having a good recovery. She has had a few days where she feels like there is never going to be an end to all this but she usually gets through that pretty quick.

They are spending today and tomorrow teaching Maddy all the new things she needs to learn to take care of her self when she goes home. She will be on insulin for s while after she gets out so she is learning how to give herself the shots. She will be tracking and writing down all her vital statistics every day for about a year. She will be doing her own spirometry at home, checking blood pressure, temp, blood sugar, weight and more. These numbers will help her detect early signs of infection or rejection. The earlier it's detected and treated the less likely she will have to be hospitalized. She will have to wear the anti embolism hose for two more months after she gets out. She will also have to wear a mask when she goes out in public for the next 6 to 8 months. We have already started working on ideas for different respirator masks that she can use when so goes out I'm public. That part is going to be kind of fun.

This weekend she will begin filling in her daily log so she can get use to it and show Dr. Rolf on Monday that she is ready for home. Then we wait to see if he wants the Nissen first or come back for it later. Oh yeah, the Nissen procedure is to keep Maddy from refluxing stomach acid or other stomach contents into her new lungs. Because there is no feeling in the new lungs it is easy to reflux into them without the patient even knowing and then they get an infection and don't know why.

Maddy is getting stronger every day. She walks around her room without any help or problems. She goes for multiple walks around the floor every day. We even wheel her downstairs and outside to walk along the river by the hospital. They say lots of food and exercise will be key to her quick recovery.

I think that's about it for now.

Apparently knowing is only half the battle...

Maddy is up and about again. She was supposed to move back to the regular floor right away but had a facial tick so they held her in ICU to do a few more tests. The spinal tap came back positive for the virus that causes chicken pox. I think I posted here that it was the herpes simplex virus, the one that gives you cold sores, that caused the viral meningitis. That information was apparently wrong. They are waiting for one more test to come back that will confirm this but I think we finally have an answer. Over the last few days Maddy has had a terrible headache. Sometimes up to a 10 in pain and she never says pain is a 10! She has been taking some heavy hitter narcotics to control the pain.

The doctors ordered an MRA, which is an MRI but with contrast so they can see the blood vessels in her brain (magnetic resonance angiography). Dr. Reddy, the neurologist, said the MRA is normal. All the blood vessels in her brain are right. He thinks the headache is a long lasting effect from the meningitis. It could last up to a month. He is going to give her a long acting med to help control it. It’s called Gabapentin and will take a few days to start working to alleviate the headache, but it is safer than the narcotics she has been using to control the pain. Especially if the stupid thing is going to last a month! He also said she should be fine to go to the regular floor. We just have to wait on Dr. Rolf to sign off on that, then hope a room becomes available soon. (update; as of 6:30 Saturday evening we have permission to move and are still waiting on a room to be available)

Honestly I have felt very safe with Maddy back in the ICU, but I know she would like the freedom of the regular floor where she is not hooked up to a hundred wires monitoring everything she does. Hopefully she will be able to get the last procedure she needs next week so we can get out of here. She is really tired of being in the hospital!

While I visited with her today, even through the pain of the headache, we were able to converse in a way that I have not been able to converse with her since she went in on June 8th. As she and I were talking it really felt like I have Maddy back again. The debilitating anxiety and fear are no longer bothering her. Not that she isn't anxious or fearful in any way, she still is, she is just facing those anxieties and fears like Maddy again. While she and I spoke about it she said “you mean I have my muchness back?” This is an Alice in Wonderland reference, I believe it sums up the situation pretty nicely. Maddy has found her muchness again and she is indeed going to behead the Jabberwocky!

The continued prayers are very much appreciated. On to the next chapter...

Carryover;

"Aunt" Toni

Maddy, I am glad you are back on track. The roller coaster ride you have been on cannot be easy but you have proven you have remarkable strength and resillience. We all will contunure to pray for you. I just wish I could do more.

Sunday, July 10, 2011 - 12:18 PM

Diagnosis

After at CT scan, 20 hour EEG, MRI, and Spinal all while under sedation and on the ventilator for 41 hours to protect her lungs we finally have a diagnosis. Viral Meningitis. The next uphill battle begins...

After being ex-tubated today Maddy was very upset and easily agitated. No matter how many times I explained the situation she could not understand why she was in ICU again. I now see that this is because of the viral meningitis as well as a side effect of the anti-seizure medication they have her on. She has spent the entire day looking around the room saying how confused she is and crying. She knows who she is, where she is, what year it is and all the other questions you ask a person to make sure they are all there. She just can’t seem to realize that she is not dreaming. Every since she was in the ICU and ex-tubated after the second surgery she has been complaining of dreams that were too real. She would wake up in the middle of a dream right into another one, and then do it again. It was to the point where she would wake up and ask us if this was real life or a dream. We chalked it off to side effects of the medications she was on. Then she started having migraine headaches, they treated them with pain meds and finally immetrex but by July 4th her little brain finally gave a cry for help we could not blame on side effects, seizures. I am guessing the viral meningitis has been effecting her for some time now. The Neurologist asked about her rash, the one that is all over her chest, back and face, and said that could be an indicator of the viral meningitis. The problem is it’s also an indicator of lots of other things, see previous blogs.

Anyway we are very happy to have a diagnosis to point the finger at. The anti viral meds the doctor has Maddy on will help the infection clear up. I am guessing it’s in the final days any way given her symptoms and what I have read about it on the internet. Maddy is afraid to be alone at all any more, and who can blame her, so I have taken the rest of the week off. Natalie, Melissa and I will take turns hanging out with her around the clock. Today she would not let me leave the room even with Natalie or Melissa there. I finally talked her into letting me eat lunch at 2:00 and come to work for a minute to load music at 5:30. Poor kid!

Like I said today she spent the whole day confused and crying. However even in the middle of all the confusion in her viral brain she was still able to get up and move around the room a little. They had her catheterized again and were able to get that taken out. They had placed a new feeding tube in her nose and she was able to eat solid food so she could get that out. She sat up in her recliner chair for three or four hours. Everyone is very happy with the hard work she is doing to make up the ground she lost being intubated again. Dr. Rolf said if she did all that stuff he would move her back up to the regular floor tomorrow. That was a little comfort to her. But she would rather he just let her go home! Poor kiddo.

I don’t know how much I will be able to update while she is recovering from this round. Especially since she won’t let me leave her side. So don’t expect any news unless something else weird happens. Thanks again for all the prayers!

PEACE!

Carryover;

Anonymous

Please don't leave her side. Tell her I love her. Be better soon. :)

Wednesday, July 6, 2011 - 06:33 PM

The Purple Shark

Continuing to think of you all and to send healing, calming thoughts. Glad they finally figured out what was wrong!

Wednesday, July 6, 2011 - 09:36 PM

With love and prayers, Chuck and Jana

Maddy's ability to bounce back from these setbacks are truly awe inspiring. A small army of devout Catholics are fervently praying for her in Northern Virginia. May God's grace fill her with peace, strength and healing!

Thursday, July 7, 2011 - 09:08 PM

ariel-T.J.

please tell maddy we love and miss her and also would it be possible to come see her and our prayers have not stopped i admire you guys all who have to be there i mean she is my friend and its got me going crazy you have been very strong in every way possible.........thats awsome

Saturday, July 9, 2011 - 12:02 AM

The Pridemore's

All of you continue to stay strong. Hang in there Maddy...you've got this! We love you! Bryan, Candi, Jacoby, Jade & Sage

Saturday, July 9, 2011 - 12:47 AM

Crappy July 4th!

This has turned out to be a pretty crapy July 4th. After the Brandon parade this morning I got a call from Melissa saying Maddy had a seizure. I got down to the hospital as quickly as I could. Maddy had been having a great day. She walked around the floor without her walker, played a bunch of games with Melissa and colored. Then she felt like she was getting another migraine headache so the nurse got her a shot of immetrex. Maddy told Melissa she was seeing some flashes in front of her eyes, very common with a migraine I should know, and then before she knew it Maddy was seizing. She had three seizures before they could get her to the ICU. Dr. Rolf got to the hospital within minutes and the neurologist was there very fast too. They took her to ICU ad had to intubate her so she wouldn't aspirate during a seizure. The anti seizure meds finally started working and they knocked her out on propofol again while she is intubated.

Long story short Maddy is back in the ICU and intubated for at least the next 24 hours. They are doing tests to see what caused the seizures. They are treating for infection in the mean time to make sure they cover all the bases. They have done a CT scan and it came back normal. They are monitoring her on an EEG for the next 24 hours. So far the EEG looks ok but the neurologist can see three is something slightly off on the right side. They will do a spinal tap tomorrow and possibly and MRI soon as well. The neurologist said it's most likely some kind of infection so they will keep an eye in her and keep treating until they narrow it down. They want Maddy to rest so we are not going into the room. She always fights the sedation when she hears our voices. Not sure what is up yet but hoping this is just another little setback and she will be back to normal soon. She was supposed to be going home Friday. Not sure that will happen now...

Lots of Room

It’s about time! Maddy has been steadily improving over the last few days. She is trusting her new lungs more and more every day. The anxiety is also getting lower, especially now that she is out of ICU. Yesterday the doctors cleared her to go to the regular floor. She was so excited! She and Melissa packed all her belongings and prepped her to move right away. Then proceeded to wait all day and night for a bed to become available.

I had to get back to work yesterday so I was not able to get to the hospital until after 5:00. It was good to be on the air again after being away for so long. There is also a lit to be done to get ready for the upcoming July 4th weekend so I will be back into it full swing all week. I hung out last night until 12:30 hoping I would be able to help Maddy get settled into her new room. But alas they didn’t move her until 4:00AM. Go figure. She did manage to get a few hours sleep and then was able to nap again after they transported her up to the floor. The only problem after that was she developed her first migraine headache. She said she woke up with such pain in her head that she was vomiting. Poor thing. Dr. Haddad came in just as she was waking up to this and crying and asked her what was wrong, she should be happy because she was out of the ICU. Maddy explained about the migraine and he made sure the nurse got her some good pain management. By the time Natalie got here it was subsiding and Maddy was able to get on with her day.

Other than that there is not a lot to report. Just little baby steps toward recovery and restoring her strength. She is working hard at her physical therapy. She did 20 minutes on the little stationary bike the set up on the floor in front of her chair. She wanted to do more but the therapist made her pace herself. She is also using her inhalation spirometer all the time. She is all the way up to 750ml, the first time she tried it she could barely get past the 250ml line. There is still a long way to go to the 2500ml line but she can see the progress and thats important! They also brought her her very own Pulmonary Function Machine. I’m not sure how it works yet but she will be using it every day and charting her progress. She will have to keep the chart even at home after she gets out and do it every day. If her numbers go down she is supposed to call the doctor right away. They will not be messing around for the first year!

All the exercise tires her out but she is still in very good spirits. She is having a little reaction in her right foot tonight so they gave her benadryl soon after I got here tonight. She is out like a light. I told her I would stick around for a bot after she slept but would leave early tonight and let her rest. Besides I have to be at work early tomorrow to meet with a record label rep.

I probably will not blog too frequently any longer. Maddy has her phone and she will have her computer again soon. She will be posting on her own again soon so keep checking her facebook. She will also be calling or texting her friends when she is ready for visitors. As you can see in the picture her room is huge so feel free to send gifts and balloons.

Peace!

Carryover

Joy

Yay! Great news :)

Tuesday, June 28, 2011 - 07:53 PM

Anonymous

I am happy for you Davis and Maddy! Keep working hard on that bike or treadmill whatever they allow you to do. What a great Father's day gift to have your baby girl on the mend. June 2011 will be one to remember! "God is good, all the time..." In Christ, Judy A.

Tuesday, June 28, 2011 - 08:19 PM

tom and flo

sounds like the prayers are bei9ng answered!!! Maddy, sounds like you have so much support from family!!! Are you able to eat ice cream to celebrate your new room? All our love. Tom and Flo

Tuesday, June 28, 2011 - 09:54 PM

Aunt Libby

So glad to hear Maddy is out of ICU. Sounds like she's ready to take control now.

Tuesday, June 28, 2011 - 10:07 PM

Stephanie

So, so HAPPY!!! I knew those lungs would come around! Well, I hoped... Fervently.

Wednesday, June 29, 2011 - 12:02 AM

Aunt Toni

Maddy, is that a smile I see on that pretty face!! You go girl!

Wednesday, June 29, 2011 - 09:37 AM

Jenn, rn

I'm sorry I didn't get to say goodbye to you and natalie but I'll always be thinking of your family. What a great gift you've received and to a great girl. Swing by the icu before you go home!

Wednesday, June 29, 2011 - 06:57 PM

nancy lail

Great news! Good days will turn into good weeks, months and years!
Nancy

Wednesday, June 29, 2011 - 08:51 PM

Judy Jones

Glad to hear you are out of ICU. Life will be a lot easier for you and your family/friends now. Keep those pedals moving :)

Judy Jones, Kevin's (K.C.) Mom

Wednesday, June 29, 2011 - 09:04 PM

Susan Russo

Great news! I hope Maddy continues with her progress. God Bless!

Wednesday, July 6, 2011 - 04:39 PM

Asleep At Last

It has been a crazy ride. The last two days has felt like a week. Maddy was finally ex-tubated on June 23rd at around 1:00 in the afternoon. I had spent the entire night with her from the 22nd to the morning of the 23rd and was not able to sleep because of a group in the waiting room watching international soccer! I was able to be there in the morning when Dr. Rolf came by and discussed the plans for that day with Maddy. She was very insistent, through her pantomime, about getting the tube out that day. Dr. Rolf understood exactly what she wanted. He had her blow through her tube and watched the numbers on the vent screen. Told her everything looked good, her chest X-ray was clear and her numbers looked good. He wanted her to get her next plasma pheresis before lowering the ventilator one more notch and testing her again. If all went well she would have it out. She was very happy with that answer. So happy she gave him a hard time about nicking one of the IV lines she had in her neck the day before when he was putting the new lines in for the plasmapheresis. The line started leaking meds, not any blood, and freaked Maddy out for a little while the day before. he got all puffy and called BS about the whole thing. Then told the nurse never mind, leave her hooked up to that thing forever! LOL, Dr. Rolf is our kind of guy and has exactly the same sense of humor as we do. It was great seeing Maddy laughing over the vent. I went home after they started her plasmapheresis around 10AM and told Natalie to call if anything went wrong otherwise text and don’t expect an answer because I was going to be sleeping!

I got a text Around 1:00 with a picture of Maddy and Natalie, no vent tube and two thumbs up. However, as I mentioned in my last blog it seems like every time the girl gets to take a step forward she has to take two steps back. She and Natalie had a good day but apparently lurking underneath Maddy’s happiness about getting off the vent was a bunch of built up anxiety, about everything and nothing. By the time I got there at 8:45 that night Maddy was in a full panic attack. I got two calls from the nurse on duty and a call from Natalie as I was heading down to the hospital. Poor Maddy, all hopped up on narcotics for days on end and huge amounts of steroids had finally cracked. Let me say that I have not experienced a full panic attack and I hope I never have to endure one. I have been on a moderate course of steroids and I can say from that experience that they put your teeth on edge. Everything got on my nerves for no reason and anything could just set me off on a rampage. I have experience with people on prednisone so I expected these side effects. I warned everyone in the family and I hid in my room. A LOT. Poor Maddy had no where to go and literally hundreds of nagging little things going on to and around her. By the night of the 23rd she was so tired of it all and so worked up there was nothing to do but help her poor little body ride it out. I did not pretend to know what she was going through and neither did her nurse. Her nurse that evening kept trying to encourage Maddy and told her many times how strong she was and that she could not imagine going through what Maddy was going through. We had the nurse call the doctor and try to get Maddy some anxiety medicine. Dr. Rolf ordered her Xanax. That helped take the edge off just enough for Maddy to get about 30 minutes sleep.

In an attempt to shorten this long blog entry I will simply say that Maddy spent the next 36 hours in a full anxiety / panic attack. I stayed up with her all night from the 23rd to the 24th. Then Natalie took over around 10AM. Maddy had calmed down by then and was getting a little rest under the influence of benadryl while getting her plasmapheresis. Just before I left she told me that she thought the vibrating the plasmapheresis did had set off her anxiety the day before. I said I was glad she was taking it better that morning. I should have known better. I had to go to work and Natalie was up again that day, when I checked in she said that Maddy was still having high anxiety and panicky. She got the nurse to contact the Psychiatrist. Dr. Mendoza, who is in charge of all the transplant patients. He ordered a long acting anti-anxiety medication on top of the Xanax and promised Maddy that she was doing just fine and the feelings she had were normal. That didn’t help much. I thought for sure that by that evening, after pretty much being up for 24 hours that Maddy would relax and sleep. Melissa was up next for the night shift and I was wrong. Maddy was up all night again. Lots of anxiety and panic over nothing she could put her finger on. Everything bothered her and nothing felt right. I was back at the hospital again this morning at 8:30 and by then Maddy seemed to finally be calming down. As the day progressed Maddy was able to get more and more composure. As I sat with her all day I just prayed and prayed that the worst was past.

By the time I swapped with Natalie at 5PM this evening Maddy was back to her old self, mostly. I could still see that she was on the edge. She was definitely very tired. Yesterday through all her anxiety they continued her tests and removing tubes. She passed her swallow test and was allowed to get real food. She was able to get out of bed and to the potty chair so they removed the catheter. They also removed the feeding tube from her nose. With less tethers and a little more freedom of movement along with the meds and tiredness she was finally able to get past the anxiety. She and I had a very good day. I spent all day being her servant and making sure she had everything she needed. I read her favorite childhood story, Winnie The Pooh, and we had some great conversations. We talked a lot about the things that were bothering her and I think she was able to get most of it out. I’m pretty sure the perspective helped but could tell that she was still a little foggy with the side effects of all the medications coursing through her little body. I’m writing this at about 10:30. As of 9:30 Maddy told Natalie she could go home for the night and then she went to sleep. Natalie told Maddy she would stick around tonight just in case but that she would leave her alone to rest. Hopefully she will not be needed but I’m glad she will be available if Maddy wakes up and needs a hand to hold.

As far as Maddy’s lungs are concerned things are looking very good so far. Honestly I am still a little hesitant to say that everything is fine. Obviously from the above it is not. But her numbers are good. She is down to 2 liters of O2 an hour through her nose, Which is almost nothing. Her lungs are expanding and she is able to blow up to 500 on the inhalation spirometer. She is able to cough up little plugs of mucus, which I’m told is very impressive because nobody knows how to cough with new lungs right away, and they have turned from bright red to light brown streaks. That means that her lungs are not bleeding and are sloughing off the old material and blood so she can get rid of it. The doctors will continue to go in through bronchoscopes to clean that stuff out for a few months. Her O2 saturation was continually at 99 to 100% all day long. She didn’t even desaturate when she coughed or worked her inhalation spirometer. The only little thing of concern is that she still has a lot of fluid on her. Her hands, especially her left, and her feet and legs are still very puffy. The doctor said her x-ray is looking a little wet. He gave her more lasix today to help her pee it all off. But of course she is no longer catheterized so she has to get up to pee, but that is good for her. I am surprised how strong she is. With that said she is still VERY weak, being in bed for almost 20 days will do that to you. But she does all her physical therapy without complaint and even does stuff, like leg lifts, when they are not asking her too. She really wants to get well and get moving!

I think that’s all. The baby steps continue. We await the next hurdle in her recovery with great anticipation, even some anxiety (LOL). But know all the prayers for Maddy are pulling her through!

Peace...

Comment Transfer;

Stephanie

Baby steps are steps nonetheless... I am right there with you hoping and praying that she is on the upswing now!

Saturday, June 25, 2011 - 11:29 PM

Stephanie

First!

And Second, too!

;-)

Saturday, June 25, 2011 - 11:31 PM

Ariel an T.J.

awsome to hear that she is taking steps for the good you have all of us praying for you. Please let me know when we can vistit i know it will still be awhile but we want to see her as soon as we can tell her we love her and pray everyday for her and your family much love T.j. and Ariel

Sunday, June 26, 2011 - 02:16 AM

"Aunt" Toni

Wow,what a trying journey she is taking. It proves she has a strong will to live and she will get through this. With all of the support from her dad,her two mothers, friends, family, and even people that don't know her that well, she has the support and prayers that will make her get through this. Hang in there Maddy! It will get better.

Sunday, June 26, 2011 - 10:21 AM

Lee

Davis, thank you for this update. My friends in NC have been specifically praying for Madelyne about fear. They told me this in an email a day or so before you mentioned the anxiety. It is a reminder for all of us to give her to God and to not become fearful ourselves. God has not given us a spirit of fear.... I am so proud of her. She is doing things for herself to get better. She will continue to recover this way. She has had a lot of practice coughing in her lifetime and I am glad it has helped with her new lungs. Praying for her and her parents as you continue this journey. Especially praying for no fear. Love to you all.

Sunday, June 26, 2011 - 10:21 AM

Kevin Jones

That's great to hear that she is awake and talking. I pray the worst is behind her and things start going smoother for her. It is also good to hear her new lungs are getting better. The docs are right when they say its tough to cough stuff up that soon after transplant. It's VERY tough, good job Maddie, keep it up! Thanks for the updates Davis, I hope the next update has Maddie doing even better!

God Bless,
Kevin (Tom & Flo's nephew)

Sunday, June 26, 2011 - 12:09 PM

Purple Shark

No tube! And EATING!!!! And peeing! I am so very, very thrilled and happy to read all this. Really, I started crying reading this post. Thank you for spreading such great news. I'm glad you got to go home to rest and I'm glad Maddy is finally getting some rest, too. Yes, she still has a hard road ahead, but I am very confident that she'll be climbing mountains next week. All right, maybe next year. If she wants to, that is.

Sunday, June 26, 2011 - 03:20 PM

Judy Jones

I said an extra prayer for you. HE must have been hearing a lot of prayers being said for a very special young lady. I feel your little steps will soon become big ones.
Judy Jones (Kevin - K.C.'s Mom)

Sunday, June 26, 2011 - 05:31 PM

Bob Meixner

Beginning to understand what 'cautiously optimistic' means. Liking the good news better than the no news so far. What a trooper that girl is...and you and Melissa and Natalie for sticking by her side through it all. I know from first hand experience how formidable she can be when she's in a 'mood'.

Sunday, June 26, 2011 - 05:40 PM

Nancy Lail

Still praying. I know the baby steps will turn into big steps and recovery.
with love,
nancy

Sunday, June 26, 2011 - 10:52 PM

Niki

Dear Madds,
I miss you so much, and I love you more than anything in the world. You're so strong and I'm so proud of you and I can't wait until you're all better and out of there so I can see you and give you a hug and tell you that I love you and I promise once you're home things will be different and no matter how busy I am, I'm gonna make Maddie time a priority. Get better soon sweety, I'm rooting for you and praying for you <3
Love, Niki

Sunday, June 26, 2011 - 11:46 PM

Eileen Menendez

We're so glad to hear that Maddy is taking some positive steps toward her healing, and we're all still praying and wishing good thoughts for her speedy recovery. Maddy you are awesome--keep up the good work! And Davis, get some well-deserved rest.

Eileen

Monday, June 27, 2011 - 11:33 AM

Susan Russo

I was very happy to hear this news. Thanks for the constant updates. Keep up the good work Maddy, and keep fighting to get better! You are in my thoughts and prayers! God has truly been by your side...we can do nothing without Him. :-)

Monday, June 27, 2011 - 02:22 PM

Jenn, rn

I was SO happy to see you today! You looked fabulous mads and I'm super proud of you. You are the most positive girls I know and I think dr. rolfe should make you a lung transplant spokesperson! You could bring great encouragement to others. You're amazing and I'm honored to have had the privilege of caring for you. Best wishes always tough girl.ch
Xoxo

Monday, June 27, 2011 - 08:18 PM

Very Slow Recovery

I know I promised that no news would be good news. But sometimes no news means there is just too much crap going on to be able to blog it. I am typing this one on my iPhone and will probably be too tired to edit it so please forgive it’s brevity and possible typoes or incorrect word usage. The baby steps Maddy keeps making toward recovery keep being shortened by new setbacks. The easiest way to get it all "on paper" is just to list them.

Still on vent because...

1. Lungs were too wet

2. Breathing too shallow

3. Want to be sure they won't have to intubate again

4. Who knows why else, it's always 'aiming for tomorrow'

If she can't get off the vent by this weekend they will have to put in a tracheotomy to avoid permanent damage to her vocal chords.

Culturing CDiff. This is an intestinal bug that people get when they are on heavy doses of antibiotics. See past blog entries on both kids for more info about this stupid bug.

Too much fluid all over. Giving multiple courses of lasix to deal with fluid retention.

Now she is showing small signs of rejection. A bad rash on her chest. They found antibodies in her blood so they have ordered Apheresis. They take her blood out, spin it to separate the platelets from her blood. Replace the platelets with new ones that have no antibodies and put it back. It's a lot like dialysis. When they placed the line to start this process they used the placement in her neck where they already have an arterial line. The old line got nicked so they had to access her port again to run her meds through.

Now as I sit with her during the night shift her tummy is nauseous and she keeps retching but can't puke of course because the vent tube is blocking everything. Poor kid just keeps retching and retching.

I really wanted to keep as complete a journal of this whole process as I could but honestly I have run out of energy to do so. Hopefully she will begin improving soon. She is a tough kid but having a VERY rough time of it.

More to come...

Transferred Comments:

tom and flo

Said extra prayers last Sunday. We can tell the toll it is taking on you, Davis. Will add some prayers for you. Do not know how I could handle it with the slow recovery since the last surgery. All of our love to both of you. Tom and Flo

Thursday, June 23, 2011 - 09:16 AM

Nancy Lail

Blogging at a time like this must be awfully tedious but please know that it is a gift to the rest of us - thank you. Still praying.
Nancy

Thursday, June 23, 2011 - 09:41 AM

Josh and Lori

Hey Davis Lori and I are praying for you both. Thanks for keeping us updated. I know how hard it must be. Stay strong and perservere. Gods hands are wrapped around you both. God Bless, Josh and Lori

Thursday, June 23, 2011 - 12:18 PM

Judy Jones

I know Maddy feels the support from everyone around her but there are people that she has never met (like myself) that have her in their thoughts and prayers. I have gotten to know Maddy through the blogs. My prayers are not just for Maddy but her support family too.
Judy Jones - Kevin (K.C.'s) Mom

Thursday, June 23, 2011 - 01:25 PM

T.J. and Ariel

Thank you for the update we have not stoped praying and have faith that God will protect her she is the strongest person i have had the pleasure of knowing and deep down know she is going to beat this thing please tell her we are here everyday with her praying and supporting her as much as we can without being at the hospital but if we were aloud we would be we miss and love her and baby steps are better then no steps

Thursday, June 23, 2011 - 01:37 PM

Michele Menendez

Davis, I think about Maddy & you every day. I admire and respect the courage and faith you both have shown during these difficult times. When adversity hits it is then we find out what we are really made of. Both of you are made of the 'right stuff'. I continue to pray for Maddy’s speedy recovery and your continued strength. Hope to see you all back with us at our Wednesday night family dinners in the near future. Thank you so much for keeping us up to date with this blog.

Sending love, hugs and prayers.

Thursday, June 23, 2011 - 02:19 PM

The Purple Shark

What an ordeal, for all of you, but of course especially Maddy. I hope she's back on the road to recovery with nothing but forward motion from now on. As Nancy said above, your blogging is very much appreciated to all of us who are wishing for the best for you all.

Thursday, June 23, 2011 - 05:44 PM

Linda Smith

Those along the side-lines have heard your story - when strangers are touched by emotion we bind our hearts together and offer prayers hoping to encourage you in the truth that you are not alone - may God gift your mind peace, your body strength and your mind courage beyond your ablities.

Thursday, June 23, 2011 - 07:48 PM

carol taylor

hang tough davis, prayers are for you not to wear yourself out before her recovery really takes off an she needs every last ounce of you + big huggy blanket of God's peace covering you all.

Thursday, June 23, 2011 - 09:24 PM

Niki

Thank you so much for taking the time to write these, especially with so much going on and being so tired.
My prayers are with Madds and your family, and please send her my love and tell her that I think about her every day and I'm rooting for her.

Friday, June 24, 2011 - 01:16 AM

Aunt Toni

Davis we do appreciate the time you take to keep us informed on Maddy's condition. She has so many people pulling for her. We are going to have the biggest and best Wednesday night dinner as soon as she can get here..so let's make it soon! Give her our love and best wishes for a speedy recovery.

Friday, June 24, 2011 - 08:45 AM

Jenn, rn

Hey mads. I'll be back to work mon and tues and can't wait to see you. Hang tough and remember all of life's challenges have some sort of meaning. Even if it's to others around you. You've been dealt a very difficult challenge but many are learning a great deal about life right at this very moment. I'll see you soon sweetheart ! Xoxo

Friday, June 24, 2011 - 10:58 AM

the matos'

hey maddy its alex and alana matos we cheered with you at lutz . we really hope your doing okay and that you get better . we are all praying for you .

Saturday, June 25, 2011 - 12:56 PM

Roller Coaster (Surgery Again)

I guess roller coaster is the best way to describe this journey so far. I can't really remember what my last update to this blog included. I try to cover everything but not repeat. No promises.

Maddy was intubated for the third time on June 15th. The same thing happened as the first time. Her alveoli started swelling and bleeding. Sats went down, pulmonary artery pressure up. They spent the next three days with her on the vent making sure they ruled out all reasons this could be happening. Top on the list of reasons was a backup in blood flow in her lungs and an allergic reaction to Cell Cept. As she recovered on the vent the docs continued checking these other possibilities.

Thursday was a pretty chill day but we were all on pins and needles so no one got much rest or went very far from the hospital. Friday was pretty good too. I got some work done and by the evening we were looking forward to Maddy coming off the vent on Saturday or Sunday. But then the doctors started ordering more tests and did not want to say why. We all figured it was to rule out any other possible reasons for the earlier trouble. Late on Friday they sent Maddy for a CT scan. She was very tired after that so none of us stayed too late. Saturday morning Dr. Faber, the surgeon, came by to let me know that the CT scan came out normal but Maddy had started to have a little blood coming out her left drainage tube. He was watching it carefully and checked her platelet count to see if low clotting factors could be the cause of the bleeding. Her platelets were fine so he said he would just watch it closely. When Melissa got here I went into work.

By early afternoon I got a call from Dr. Faber Saying he was not happy with the radiologists reading of the CT scan. So he tracked him down and they went over it together. He said he was not happy with the look of the blood flow in the vein he had to do the repair on. He believed the blood flow restricted which could cause a backup and high pressures, leading to the problems we see when she comes off the vent. He wanted to go back in and check, and replace the repaired area. He said he would do that on Sunday morning after Maddy had time to digest the nourishment she had been getting through the tube in her nose. He also said they saw some small pulmonary embolisms in her right lung and they wanted to put an IVC filter in to catch any future clots before they get to the lungs. This is a ten minute procedure they do in radiology and they needed me back to sign the consents for the procedures. So I headed back to the hospital.

This all seems to be movement in the right direction. I guess I'm like a surgeon in that I like concrete answers to problems. Find what's broken and go in to fix it. I was not happy they were going to have to go back in, but I was relieved they could point to another possible complication and go in and fix it.

When I got to the hospital the radiologist who was going to do the IVC filter explained everything to me and I signed the papers. Then I went in to hang with Maddy until they took her down. While the nurse, Kelly, was moving all the equipment to Maddy's bed in preparation for transport Maddy started coughing. Kelly suctioned her tube twice and cleared the mucus. Just after she finished that Melissa noticed Maddy's right drainage tube was full of blood. We tried to calmly point it out to Kelly, because Maddy was awake and we didn't want to alarm her. Kelly immediately called Dr. Haddad and he called Dr. Faber. Within minutes there were at least three doctors checking everything and consulting. They decided to get her into the OR right then instead of waiting until sunday morning.

Dr. Haddad pulled me aside and asked if I had any questions. He explained what they believed to be the problem again. Dr. Farber got there soon after and explained it as well. It took about an hour to get the whole surgical team to the hospital on a saturday afternoon and get the OR prepped. Maddy bled out about 400 CC's in the first 15 minutes then it slowed to a minimal amount. All her numbers looked good and she was very comfortable and stable.

After about three hours is surgery Dr. Faber came out to explain everything. He found a stricture in one side of the repaired blood vessel and a clot blocking the other end of the repaired area. He removed it and replaces the repaired section all together. I posted a pic of the diagram he drew us on the tumblr blog. He also checked every other connection they had made during the transplant and he said everything looked good. He said that the problem with the pulmonary vessel can explain the bleeding from her left side. He could not point to any direct reason for the blood that came out that afternoon on the right side. He hoped this problem explains the issues she has when she is taken off the vent. If it does not solve the problem there is nothing surgically that can explain it.

It took another hour to close Maddy back up. They went in through the original incision area they used for the transplant so she is back to square one. We were able to go back and get a quick look at her at around 9:00. She was resting comfortably so we went home. I stayed away as long as I could make myself today because I want her to rest. When I called to check on her this morning Kelly, her nurse again today, told me that Maddy tried to get the night nurse to call me and wish me a happy father’s day at 4am. Such a sweet kid! She was up for a few minutes when I got here but is asleep again and that's good. Dr. Haddad wants to wean her off the vent tonight, scope her early tomorrow morning and ex-tubate her soon after.

So tomorrow we try all over again. We are all excited and nervous at the same time. Praying that this will be the time she can begin her recovery!

Again transferred comments

Lee

I am praying that these loose ends will get her on the road to recovery!

Sunday, June 19, 2011 - 08:36 PM

Nancy Lail

Also praying for a quick and full recovery.
I last saw Madelyn when she was about 4 or 5 years old. You were at your Aunt Jane's in DeLand.
Nancy Lail
(Cousin from the Miller side of your family.)

Sunday, June 19, 2011 - 09:10 PM

Niki Freeman

Can I send Madds get well cards or presents in the mail? [=

Monday, June 20, 2011 - 12:27 AM

Anonymous

we are still praying for you everyday thanks again for taking the time to let us know what's going on.-Ariel an T.J.-

Monday, June 20, 2011 - 01:37 AM

Susan Russo

Hi Davis -

My mother-in-law who is 68 years old with COPD had a blood clot in her lung and was intubated for over 2 weeks recently. I know what you are going through. They tried quite a few times to extubate her, but kept reassuring us that the longer she was intubated, the better the healing process. She had water on her lungs as well. There was mention of either a lung transplant being needed or another surgical procedure where she would have needed to put that machine over her throat in order to speak. Priase God, she didn't need either, especially at her age. Obviously, you don't want Maddy intubated for too long, but her lungs need to heal. My mother-in-law needed speech therapy and rehab as she had trouble walking after the ordeal - very weak. Today (a couple of months later), she is doing much better.

Maddy is a strong, young woman....I pray for a full and speedy recovery.

God Bless you all!!!

Monday, June 20, 2011 - 09:47 AM

"Aunt" Toni

We were anxiously awaiting an update on Maddy's condition. I am glad you had some time to post an update to your blog. We are hoping and praying that the surgery was successful and that Maddy will be on her way now to a full recovery. What a sweet girl to think of her dad on Father's Day after all she has been through. Hang in there Maddy! There are alot of people supporting you and wishing you well.

Monday, June 20, 2011 - 10:04 AM

Jenn schauer, rn

Hi mads! I'm over in orlando following your blog even on vacation. I was bummed to hear about the setbacks. (it's cuz I left and not your nurse right now!) Anyway, it sounds like things have been fixed and you're on your way to yet another recovery! I'm still thinking of you and can't wait to see you when I get back. Keep that awesome attitude of yours and stay positive. Hugs and kisses from me to you.

Tuesday, June 21, 2011 - 10:05 PM